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Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study

BACKGROUND: The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery—helping them...

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Detalles Bibliográficos
Autores principales: Masterson, Yamini, Brady, Erin, Miller, Andrew
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434071/
https://www.ncbi.nlm.nih.gov/pubmed/33055067
http://dx.doi.org/10.2196/15174
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author Masterson, Yamini
Brady, Erin
Miller, Andrew
author_facet Masterson, Yamini
Brady, Erin
Miller, Andrew
author_sort Masterson, Yamini
collection PubMed
description BACKGROUND: The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery—helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. OBJECTIVE: This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment. METHODS: We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury–specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. RESULTS: Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking. CONCLUSIONS: Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery.
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spelling pubmed-74340712020-09-30 Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study Masterson, Yamini Brady, Erin Miller, Andrew J Particip Med Original Paper BACKGROUND: The effects of brain injury, structural damage, or the physiological disruption of brain function last far beyond initial clinical treatment. Self-tracking and management technologies have the potential to help individuals experiencing brain injury in their personal recovery—helping them to function at their best despite ongoing symptoms of illness. However, current self-tracking technologies may be unsuited for measuring the interconnected, nonlinear ways in which brain injury manifests. OBJECTIVE: This study aimed to investigate (1) the current informational practices and sensemaking processes used by postacute brain injury patients during personal recovery and (2) the potential role of quality-of-life instruments in improving patient awareness of brain injury recovery, advocacy, and involvement in care used outside the clinical context. Our objective was to explore the means of improving awareness through reflection that leads to compensatory strategies by anticipating or recognizing the occurrence of a problem caused by impairment. METHODS: We conducted a qualitative study and used essentialist or realist thematic analysis to analyze the data collected through semistructured interviews and questionnaires, 2 weeks of structured data collection using brain injury–specific health-related quality of life instrument, quality of life after brain injury (QoLIBRI), and final interviews. RESULTS: Informational practices of people with brain injury involve data collection, data synthesis, and obtaining and applying the insights to their lifestyles. Participants collected data through structured tools such as spreadsheets and wearable devices but switched to unstructured tools such as journals and blogs as changes in overall progress became more qualitative in nature. Although data collection helped participants summarize their progress better, the lack of conceptual understanding made it challenging to know what to monitor or communicate with clinicians. QoLIBRI served as an education tool in this scenario but was inadequate in facilitating reflection and sensemaking. CONCLUSIONS: Individuals with postacute brain injury found the lack of conceptual understanding of recovery and tools for making sense of their health data as major impediments for tracking and being aware of their personal recovery. There is an urgent need for a better framework for recovery and a process model for choosing patient-generated health data tools that focus on the holistic nature of recovery and improve the understanding of brain injury for all stakeholders involved throughout recovery. JMIR Publications 2019-11-12 /pmc/articles/PMC7434071/ /pubmed/33055067 http://dx.doi.org/10.2196/15174 Text en ©Yamini Masterson, Erin Brady, Andrew Miller. Originally published in Journal of Participatory Medicine (http://jopm.jmir.org), 12.11.2019. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Participatory Medicine, is properly cited. The complete bibliographic information, a link to the original publication on http://jopm.jmir.org, as well as this copyright and license information must be included.
spellingShingle Original Paper
Masterson, Yamini
Brady, Erin
Miller, Andrew
Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study
title Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study
title_full Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study
title_fullStr Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study
title_full_unstemmed Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study
title_short Informational Practices of Postacute Brain Injury Patients During Personal Recovery: Qualitative Study
title_sort informational practices of postacute brain injury patients during personal recovery: qualitative study
topic Original Paper
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7434071/
https://www.ncbi.nlm.nih.gov/pubmed/33055067
http://dx.doi.org/10.2196/15174
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